Transition to adult ventilation services guide for home ventilated patients

What is transition?

There are national guidelines to make sure that every child receives a structured and planned transition into adult services. This makes sure your ongoing medical, psychosocial, educational and vocational needs are properly met. We recognise that this can be an uncertain and difficult time for both young people and their families, especially if you have a long term condition or disability and see more than one consultant or service.

This guide explains the transition from children’s to adult services for young people who are ventilated at home and are seen by the Home Ventilation team at Sheffield Children’s hospital.

Transition clinic visits

It is normal to go to 2 respiratory transition clinics at Sheffield Children’s before the transition to adult services.

Usually these 2 clinics are between 6 and 12 months apart. This lets you have enough time to make sure that any concerns you may have are addressed. This also lets the medical teams involved in your care to liaise effectively.

This is negotiable depending on your needs and the complexity of your condition. Some young people may only need 1 visit before opting to transfer to adult services. Others may need a more staged transfer, but this will be discussed in the clinic setting.

Can I still attend Sheffield Children’s hospital if I have started transition?

Yes. Until you have been discharged from the children’s respiratory service, you will remain under Sheffield Children’s hospital. Your respiratory consultant will record in your medical notes and agree a transition date too.

Who will be in the transition clinic?

At both clinic visits you will meet the adult respiratory consultant you will be transferring over to. Your current respiratory consultant will also be there. There may also be other health professionals in the clinic. These may be the paediatric home ventilation nurse, your paediatric respiratory physiotherapist, and a respiratory physiotherapist from the adult service.

In the clinic the adult consultant will meet you and will discuss your ongoing management needs with you, your family, and your paediatric consultant. They will explain how the service works from an adult perspective. You will have a chance to look around the adult unit, and answer any questions you may have.

It may be possible that the physiotherapists are able to show the adult ventilation equipment to you to see what they look like. Your equipment may not change, but this will be discussed with you at the clinic.

Will my equipment change?

Ventilator

Adult services use a different ventilator manufacturer than in Children’s services. Although the ventilator may look different, it will work in the same way. It will provide exactly the same support as your current ventilator does.

Mask

If you are mask ventilated then you will continue with the same mask to begin with. After some time you may need different one if the mask no longer fits your face.

Tubing and filters

Usually these items will stay the same as the ones you currently use. If you are given a different ventilator then this may use different filters too but this will be explained by the adult physiologists.

Outreach service

Outreach nursing is specific to paediatric services, so there is no community outreach nursing service in the adult setting. But, there is a adult respiratory function unit at the Northern General Hospital. There are a large number of physiologists who all know the ventilators and can help you with ventilator related problems that you may have. They will have your ventilator prescriptions on file and be able to issue with replacement equipment if needed.